Development and usability testing of a web-based psychosocial intervention for women living with metastatic breast cancer: Finding My Way-Advanced

197 Background: Advances in targeted therapy have led to an increase in the median overall survival in patients with HER2+ metastatic breast cancer (MBC). However, patient attributions related to living longer have not been studied. Methods: A one-time, web-based survey was administered through multiple US-based breast cancer organizations. The inclusion criteria were being female, age 18+, having HER2+ MBC, and living in the US. The surveys included health related quality of life (HRQL), symptom burden, activities of daily living, satisfaction with medical care, work productivity, and attributes of living longer. To assess beliefs about length of survival with HER2+ MBC, participants were asked to rate the importance of 16 items. Descriptive results were stratified by time since metastatic diagnosis and HRQL. Results: Of 560 attempted surveys, 365 (65%) participants met inclusion criteria. Mean (SD) age was 53.6 (10.5) years, 93% were white, and 27% reported having participated in a clinical trial. 59% of respondents reported living ≥4 years since HER2+ MBC diagnosis. Common reasons patients gave for living longer included: choosing the right doctor/medical team (91%), having a positive outlook on life (79%), and learning about the disease or treatments (79%). Women with <4 years since HER2+ MBC diagnosis were more likely to report having a positive outlook on life (85% vs 76%), using complementary and alternative medicine (45% vs 36%) and exercising regularly (74% vs 66%) compared with those having ≥4 years since diagnosis. Women reporting a better compared with a poorer HRQL reported more frequent regular exercise (73% vs 49%) and more often had a positive outlook on life (86% vs 64%). Conclusions: To our knowledge, this is the first study of women with HER2+ MBC and their attributions about length of survival. Having the right medical team, remaining positive, and being educated about the disease and its treatments were most important to participants. Women reporting better quality of life were more likely to report multiple attributions of living longer. HRQL and patient perceptions about their survival are important factors that should be considered in providing patient-centered care.

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Hellenic Alliance for Metastatic Breast Cancer: A Platform of Support, a Platform for Life

Journal of Global Oncology ◽

10.1200/jgo.18.68500 ◽

2018 ◽

Vol 4 (Supplement 2) ◽

pp. 165s-165s

Author(s):

A. Tarampikou ◽

Z. Saridaki ◽

S. Kolokotroni ◽

A. Christopoulou ◽

S. Agelaki ◽

...

Keyword(s):

Breast Cancer ◽

Quality Of Life ◽

Clinical Trials ◽

Metastatic Breast Cancer ◽

Social Services ◽

Metastatic Breast ◽

Online Forum ◽

Web Based ◽

Medical Facilities

Background and context: W4O-Hellas (Women for Oncology-Hellas, a network of women professionals in oncology) and K.E.F.I. (an association of cancer patients) joined forces to create the “Hellenic Alliance for Metastatic Breast Cancer”, a project awarded through the SPARC initiative. The project is consisting among others, on creating, promoting and maintaining a Web-based platform of education, information, communication, advocacy and support for MBC patients in Greece. Aim: The aim of the platform is to provide education at patients and caregivers on various aspects concerning the disease, from diagnosis to palliative care, the available medical facilities, social services, benefits and allowances, clinical trials and issues concerning quality of life and psychological support. Strategy/Tactics: The development of an innovative Web-based tool was included in the “Hellenic Alliance for Metastatic Breast Cancer” project. It was overseen by a steering committee with W4O-Hellas and K.E.F.I. representatives, journalists, health economics advisors and state representatives. A support team was also created, to run and update the platform. Program/Policy process: The platform (“w4life.gr” reading “women for life” or “life for women with stage 4 disease”) is functional since June 2016 and was officially presented to the public on November 2016. The site´s structure is consisting of the main sections and an online forum. The sections contain information about the disease, the access to doctors, medical facilities, social services and patient groups, quality of life, nutrition and exercise issues, patient guidance and clinical trials available in Greece. The online forum is accessible 24 hours per day, and provides information and update about the network´s actions and upcoming seminars and forums. There is also a patient support direct line available on weekdays and access to other useful links. An online survey measuring quality of life data are running through the platform and the results will be presented in the near future. Since last year, a mobile application was also created aiming to an easier and user friendly access. Outcomes: By March 2018, the platform had 27,018 page views, 10,416 users who completed 13,020 sessions, with average session duration 2:23 minutes and bounce rate 74.54%. w4life received two awards from the Boussias-Health Care Business Awards-2017. The Gold Award, in the e-Health category digital applications for information and integrated patient care and a Silver Award for actions aimed at information, awareness, and prevention. What was learned: During the severe Hellenic socioeconomic crisis we have found that an alternative approach, as the above described, of dedicated oncologists toward their patients is needed, easy to use, helpful and sustainable and can provide important information and comfort to women with mBC their families and caregivers.

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